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I think it's disgusting that you pay stamp and NIC etc tax etc .....and Gov. doesn't help you when needed .....

Makes me angry grrrrr perhaps I should be called...no no wont say it

Love to All

Win (poo) xxxxxxxxxxxxxxxxxxxxxxxx

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I have just started to reread this thread. Funny when I see I have written something and I don't even recall any of it. I am about to see my new neurologist and needed to get a clear set of notes about work. I see such wonderful people form caring wonderful relationships that are truly inspiring. This is a wonderful thread :):-D


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I seem to remember that when this non-mandated crew got in, they said they wanted to support people who 'do the right thing.' How does cutting support for those who do work and increasing the number of hours needed to qualify for WTC do that? Seems to me that many who can't increase their hours to 24 will quit because they can't afford to live and will go on the other benefits instead.


Madness, I call it. Also cutting benefits for the disabled, closure of the 'Remploy' factories because they're not all making a profit. Well, excuse me, but I thought the idea of Remploy, who use a disabled workforce, the idea was to promote work amongst the disabled and to give them a worthwhile place in society, to be able to make a valid contribution to society and feel proud about who they are and what they do. Not to make a profit necessarily. Even if they make a loss, the powers that be should step in to help or allow concessions to be made, not close the factories.


The politicians said they want to encourage disabled people to go into the mainstream of employment. Well, I don't know about you, but if I was running a business, why would I employ a disabled person who produces a couple of items an hour when an able bodied person produces ten? It just isn't going to happen.


Most of the people who've been moved out of Remploy are still unemployed and have no prospects due to the callousness of these new policies. It's almost going back to National Socialism of the 1930's by singling out the most vulnerable in our society and picking on them. What's next - SAHers? or is it already happening?

Good to see you around GG and Sarah Lou.


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  • 2 weeks later...

Hello everyone!

Had a great session with my rehab therapist this week. I've been given the ok to look at volunteer opportunities. By volunteering a short time each week we are hoping it will help build my stamina and help us determine what my limitations are in a work environment. We know what some things are, like I can't function for long in an environment where everyone talks at the same time (think desks pushed up together and many people on the phone).


But we are still figuring out things like concentration and ability to switch focus and so on. Volunteering will also give me a sense of reward, something I miss from working. I like doing a job well and working in a team and I miss that.


Next steps are to pick a few from hundreds of opportunities and my rehab therapist will help me with the choosing process.


Would love to see some updates from everyone else on how it's going for them. Cath, this is your first week back to work, I'm thinking of you and wish you well. Pacing is what everyone talks about. I'm still learning how to pace!


Setting priorities is a big one. What is important to you, what do you need to do, what do you want to do, and what can wait until later so you can rest now. Take mini-breaks several times a day. It's so important to give your brain a break. Sometimes a walk, sometimes just a stretch and closing the eyes along with a deep breath. And of course, drink lots of water!

Sandi K. Xoxoox

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Hello guys,

Gosh it's been a while since I've been skipping around in here!

Sandi, it's good to hear about how things are going for you, good luck with the volunteering.

Work for me is going ok. Some days are better than others, one day I'll be fine, in the evening I can still hold a conversation with Miss C, and cook her tea, not at the same time though, I still can't multi task! Other days work totally floors me, at the end of day I can't see, think or walk straight.

For me it's all about taking each day as it comes.


I'm going into hospital for an operation next week, I'm a bit worried that the time I'll need off work might cause me to struggle more when I go back.

Will just have to wait and see I guess!

So how's things with the rest of you guys?


Cath... You've almost got through your first week back! Well done.

Take care and keep smiling,

SarahLou Xx

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Hi sandi thats good to hear about you volunteering, really hope it helps .I started back this week not working clinical on the ward but doing admin, worked 9til 5 mon and 10-6 tom also had tickets to see chicago the musical on tues night so spreading my spoons pretty thin this week . Even though i was tired when i came home on monday and had no spoons left after dinner i thought it went well.


Felt good on tues went to see chicago really enjoyed but was very shaky by the end .Been very wobbly since balance is off and head is spinning, feel a bit better now hope im feeling ok for work tom. I ve realisesd that its not going to be easy , However i need to perservere and get back to normality. I do think its unfair the recovery process , i left hospital not expecting such a long haul , never mind keep smiling eh .

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That's real progress, let me know how you get on - well done indeed!!

Cathmat and Sarah Lou


- it's good to hear about you too, extra half hour or not, that is an incredible achievement and am so pleased you are able to do it, brilliant!!


I hope you are all coping well - but please listen to your own bodies - if it becomes too much back off - listen to me, old Mr do as I say not as I do!!

Going now before I fall off my perch!


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Hey Kids :)

Hello all BTW BTG'ers. I was gonna post Wednesday but figured I'd wait until the end of the week. This week was the busiest week at work since my SAH. And you know what, I made it! No sick time, no lates. 36 hours of pure hard work. It felt good other than the obvious fatigue.We were very busy after the 4th of July holiday and it never stopped. Can't say I didnt struggle some. Monday was the worst and then it got better.


I went to doc today for other issues. He wants me to have colonoscopy. he's not worried but just wants to be sure. Blood in toilet never a good thing.


I have finally decided to start a daily journal. I hope it will help my progress. I have a pocket calendar and i give myself a number grade from 1 to 10 for headache and overall health. Monday was an 8 headache and 5 health. Tuesday was 8 and 6. and so on. I may make some small notes but dont have spoons to write a book. Has anyone done this? Did it help?


Anyways, need to be 40 hours by September. Very simply my job is a full time job. I do some accounting work, some IT, reports, customer service, account management and payroll. Talk about multi-tasking. Not sure I do it as well as I used to but I manage. Anybody ever heard the saying "Fake it til you make it"? I dont mean my job but my health and stamina. It might just work.


Sandi- You are the leader of this lovely lot. Thanks for revisiting. I am glad to see you are getting the rehab help. That must be so valuable. I too have been thinking of volunteering. I do some now but want to do more when I feel better. It is a gift that we can give to others. Selfless and I applaud any who do it. And we are the beneficiaries.


Cath- Please join the BTW group. Much experience and alot of support here. We would love to hear how you are doing.


SL- I know we talk but you are a heart of gold. And you are so strong to have changed shops and still been successful. I am so proud of you. We share our good days and bad and some days we are just shattered. But we continue on :)


Macca- We get knocked down, we get up again, but their never gonna keep us down. Hope you are getting on well mate. Keep on pushing on.


Mary- You didnt know about this thread? Silly rabbit. I know work is frust for you at times so please vent here. It is a great group.


Hi also to Sarah, Win and anyone else I've missed. We can do this.

Peace and love,


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Wow David that is great! I wish you well. You will be back up to full time in no time. I had a really, really hard week and I am just spent. I could not do one more thing any of the days. I am hoping to reload this weekend. If my job was a little less stressful (meaning all the stuff you don't want to know) I maybe could manage the stress better. When Cath said she went to see Chicago I was so impressed! Any big evening events are very taxing to me. Or it seems any big appointment or event during the day exhaust my brain for days.


I must say that Sandi you are my example and you give me strength to keep up with this "investigating" my brain. I have been really wondering why I am going through with the testing and psyche eleval etc......there are days I feel it will not change my outcome or diagnosis. I do not think I would of done any follow up without you. I feel I just do not have the energy to do the work to make it better on my bad days/weeks. Even when I think about reducing my work load that seems overwhelming. I cannot simply have it all right now. On one hand I still do so much more than so many without an injury to the brain so I wonder what I am complaining about. Balance, balance, balance.


How many people do you figure have a SAH never do anything after it as far as follow ups, or they are normal and have nothing wrong? Or just were told this is the way it is? Oh that cold never happen as they never tell use anything! LOL, They just watch us talk and are wondering if we are trying to pull a fast one on them or something. I wonder what those Dr.s think?? Hum?? Someone has to ask one someday when they are just looking at us with a blank face.


Just had a moment ...........BTW means "back to work", there that is a great example of my brain and how it functions!

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2nd day back and had a party literallly , girls put food on to welcome me back and to say bye to another nurse going on maternity leave was very touched. Didnt do an awful lot in the way of work sorted out passwords ect and watched one of my collegues teaching patients. Not doing anything is not an option i need to keep busy in work .


This however has taken its toll back on my crutches in work wobbling once more must because i am tired and working my broken brain . working 2 full days is hard but needs must due to transport issues ect . Everyone is very supportive and kind but cant help but feeling a tiny bit useless im not the person they are used to working with , they would never say anything but i feel it , Will i ever get back to my old self ?

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Well done everyone on your efforts on the work front - you all deserve a pat on the back for trying so hard - be proud of yourselves:-D


As for me, I have this morning finally received confirmation of my terms & conditions of employment for my new job. It has only taken 2 months and 4 days to receive this after being told on 10th May I'd got the job:roll: There is a total of 72 pages of A4 papers with print on both sides to wade through:shock: Forms to read, digest, sign and return - a job in itself!


The start date is this coming Wednesday 18th July - I was hoping for a day of relaxation after my MRI on 17th but it is now not to be:frown:


Now, this is where I will find out if I can hold down 3 different jobs - wish me luck! Anyway off to work at the cafe in half an hour:biggrin:


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Hi Cath,

You have only been back TWO DAYS!! It will take time for you to get back into the swing of things after being away. I found at first (both at work & in my home life) that people seemed a bit 'odd' with me. It soon settles once they can see how you are & realise that you are still you. I think any brain issue scares people & they are not sure how much of the person they knew still remains. Your colleagues will soon get used to you again & become more at ease with you, like they were before, so try not to worry too much.


Well done on going back & take things as easily as you can.

Sarah good news that you finally got a start date! Good luck!

Michelle xx

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Cath, You are doing great, just the new enviroment is so different, noises etc... I felt like the "new girl" when I went back and things came together. One tip I had with a yoga move is if you need a little 5 minute relaxation make fist and stack them and put your forehead on them for about 4-5 minutes and relax. It can be doen almost anywhere but it an easy move to help with tension etc. Good Luck.


Sarah???? 3 jobs & kids, you are super woman to me. I mean it. I would be hiding in my closet!! Well no, I know you do what you have to do but I am too old to change!

You are amazing.


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Oh there is so much I want to say, I only hope I'll remember it all!:crazy:

Love to see so much contribution here, we all need support. Going back to work is such a major achievement post SAH.


Cath, how lovely of your co-workers to welcome you back so kindly. I found the same kind of slight awkwardness where people weren't sure how much to say or do etc. I found that I was just as unsure as them about myself. I wasn't sure how much I could take on. I wasn't sure of myself when I was in conversation about how I was feeling. I was putting on a brave face for my team in most cases and saying all was fine. I think things settled down and became less awkward when I began opening up. When my words started to match my body language we all became more comfortable about it.


Somedays I could honestly say 'I feel really great today!' but others days I would say stuff like 'that meeting was too long for me and now I have double vision and my legs aren't working'. It was really hard for me to admit when something was too much but it helped to ensure trust with my colleagues and team and took the awkwardness away.


Sarah, congratulations! Wow, lots of hurdles to go throu for job #3. I'll bet you have amazing organizational skills, your managing of the household, taxiing the kids around, and scheduling three jobs is brilliant. How did you get to the point where you can quickly repriortize and change the p,an as needed without sending your head into the land of symptoms? Changes are getting easier for me but I still like things planned and scheduled ahead of time with no surprises.


Mary and David, thank you for your kind words and all your support here.


David, I keep a journal too. I started it for my doctor but found no one else but me reads it. I keep going because I keep track of my symptoms and progress and dates. You are doing so well, look at how great last week went and it was a crazy week with your website down. Imagine that same week happening a month ago.... You are progressing David. If only there were never any backslides! If we all kept going forward all the time it would be so much easier but for every good day or two there can also be a bad day. It sounds like you are beginning to see some good days though and that is really really great news.


Mary, you are one of the hardest workers here. You just keep going regardless of anything. If there is a wall up you just knock it down!! If we have to live with these extra challenges I guess it's important to me to understand exactly what I'm living with. That's why I keep asking 'why'. Where was the bleed, what kind of damage, what happens now, does the neuro have a clue, does the GP really understand, etc. I have the utmost respect for our medical professionals but when it comes to living with SAH I believe we are the experts and the docs can only help with one symptom at a time. We 'get' the picture as a whole.


Macca, I hope you are resting this weekend. Please tell us how you are doing. How long before your next tests? You are so positive for everyone here. Know that you can vent too.

GG, your advice is so valuable. You rembember your experience so well and we are all benefitting from your words.


I'm stil going through the list of volunteer opportunities, I've narrowed down to 5 or 6.

Good luck with next week/shifts everyone! Onward and upward!

Sandi K. Xoxoox

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There's too many for me to mention everyone individually. Thank you for everyone's support, it can be difficult sometimes, but I get on here when I'm down (and not asleep). I have some more tests on 27th of this month, until then it's just keep plodding on putting one foot in front of the other etc. Easier said than done some days!


Sandi, thanks for asking, I'm not doing too badly at the moment, still at work, 37 hours a week! By Friday I'm bushed!!


David, I'm truly glad to hear you've started that diary. I'll buy the book when it comes out!!


Win, Cathmat, Sarah Lou, Kempse, Sally, Oceanside gal, Teechur, Mary, Keith and everyone, thanks for all your posts, even though it's impossible to reply to them all, I read as many as I can and they give me such a lift, I can't really find the right words.


I sit here reading them and I say to myself:

'that's how I feel'

 'thats what I thought'

 'So you've been through it as well have you?'


and so on, so thanks for your understanding and thanks just for being there everytime I need you

Bit tearful now, I'm going now, back later or tomorrow


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Passes Macca my last tissue...here ya go..now blow ffft ffffft there there xxxx lol (It's the Mum in me )

Macca you be Well pal xx

Be Well All and keep working.

Love to All here and get rest for work All xx

WinB143 xxxxxx

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  • 2 weeks later...

The daily grind!

I have kept a journal since last year sometime. It is proving to be helpful. Not only for my sanity but for a way to recall those simple things that slip my mind. Still there are the "voids" in my memory where I should have written something down but didn't think it was that important at the time.

There will be a couple of hearings coming up soon. I will need to refer to the journal then.

The union is going to arbitration soon, but I have no idea how long that will take.


One of the things I find most frustrating is the fact that in the past, many employees who worked for the city would end up taking sick leave when they were close to retirement, not because they were sick, but they wanted to use the time up before they left.

Here I am trying to access it legitimately and I cannot.


Part of me wants to talk about the legal battle I have taken on in that regard. The other part of me is wise enough to know the internet is not a private place. I swear I am wearing thin on family and friends. I know that a year from now when I am retired I will look back and think to myself "what a waste of unnecessary stress"

Only 403 days to go.... be happy..... there's no place like home..... there's no place like home.

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  • 2 weeks later...

I know at times it is difficult to be happy when I internalise things.

I have come to the conclusion that the only people who suffer when I am not happy are my friends and myself. Certainly not the people who upset me.


I have discovered that legal things move even slower than civil servants:lol:.

There will be no news about my arbitration till early next year, hopefully within a year of me requesting time off. I kind of think they want me to retire and go away. But in the mean time I will do what I can to be cheery and try and focus on getting better rather than woe is me.... it has been far too long with the woe is me stuff.


Today is a new day and I want to start fresh.

Being the silly person I am, I ordered a new hat to celebrate the new me.

Once I get it I will post a picture :wink: It doesn't take much to make me happy!

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Hi Carl,

sent you a PM. Only 390 day to go now! That should make you happier!! Resolve to make the new hat into a new you! There is a book called "Six Thinking Hats" by Edward de Bono ISBN 0-14-029666-2. It is sold in the USA and Canada. It sounds as though it would 'be right up your street'! I'll send you details. I found it to be very interesting.


Keep chugging away Carl, you are nearer the end than the beginning, don't give up until you finish the trip. Just make sure you decide when and where to finish it!!

Good luck


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Hello all:

Love the hat Carl, it suits you well. Been a while since I've been on this particular thread as the heat in the upper US has really taken its toll on me and my limited spoons. two months of 90 degrees every day. Not good for a brain patient.


I have kept my journal since I started (july 1st) and just give myself a number for each day. It may help in the future as it will be 4 weeks until I must go from 35 to 40 hours. While 1 hour a day more may not seem like much, for those of us with an SAH, it is quite a battle.Right now I work 4 full days and then a half day on Friday but come September 7th that will be no longer. A little scary having to go back to the 8 to 5 grind.


I have no idea if I can do it, but my hunch says I will make it. Not much other choice. I know others here have done it before and I won't be the first or last. Just dont want to be a zombie that stumbles to work every day and comes home and sleeps.

I hope everyone is doing well in their back to work battles and would love to hear how everyone else is doing.


You're so close Carl, don't give up. I wish you good health and fortune. I have to pine away another 15 years before I get to that magic "retirement".


Macca- Hope you are well and hanging in there. I know not easy for you.


SLou- You know I'm with you and lean on me, I will be strong enough to carry us both


Sarah K- You are superwoman- you do all this an kids, give you so much credit


Sandy- do you go back anytime soon?


Mary- I hope your new schedule is better. I still cant figure it out. Tell me your work days so I know when not to bother you


Cath- How are you getting on lass?


The incomparable GG- Can't wait to hear your response, it is usually wise :)

Love to all,


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Hello guys,

I've recently had two weeks off work following a laparoscopy operation. The op totally knocked me for six and recovery took longer than I'd expected. First op since SAH and I never want another one!

I went back to work for one day last week, that totally floored me. I couldn't remember simple things and kept asking the same questions over and over again. I really didn't feel with it. It was very much like the first week of being back at work! Luckily most of my co workers were understanding.


This week so far I'm also totally zapped after work. Yesterday was a struggle to even walk by the time I got home. Head hurt, eyes ached, brain went into shutdown, an early night for me.

I wonder if the operation really did push me back quite far. I still don't feel right.

I'm off for two weeks soon so hopefully that time off will help. Although when I go back I'll be increasing my hours.


There never seems to be two days the same, one day I seem to cope much better than another day.

As always we take a big deep breath and carry on eh.

Much love and big hugs to you all, stay strong! We can get through this together!


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hi david im ok , back in work like you im going up to 3 days next week. Working makes vertigo worse and some weekends are a wash out , i wish i had my old energy levels or people could feel what i feel even if its only for 10 mins , problem is we look so normal . how are you doing x

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I'm certainly not superwoman David, but thanks for the title anyway!

I have now been doing 3 jobs for a total of 4 weeks and so far, so good. A few of the extra days that I was asked to work at the cafe were cancelled due to the unseasonal summer weather, but I have been asked to work tomorrow so that a colleague can attend a funeral.


I am actually amazed and don't want to speak to soon, but recently the extreme tiredness that I have suffered since my sah has abated. Whereas I was having a daytime sleep several days a week (anything from 2-6 hours) and having thought I would be like that for the rest of my life, I now get through nearly every day without a nap - many days I survive from 7am (ish) to 11 or 12 at night.


The change happened about the 3 and half year mark for me - although that probably seems a long time away for some of you, it may give you some hope that it is possible for the tiredness to ease and in turn make life a little easier. I do hope I'm not tempting fate saying all this, but nearly 3 months of having normal energy levels is something I feel worth celebrating!


Even my 11 year old son, who would often say "Oh, you're not going to sleep again are you?" has noticed the difference in me. I still don't have his energy levels, but it's a start.

Keep going everyone, I'll give you all a gold star for effort!


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Well done Sarah - it's a case of the body and brain readjusting - again -to what's happening to it. I haven't napped during the day since just past the one year mark, unless I'm on hols and I have nothing to do and am just lounging around (I think thats moer boredom than anything).

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Wow, I have just had THE most amazing meeting with HR about going back to work! I am in a daze I think, you know that saying about if it's too good to be true...? I spoke to ACAS again on Monday just to be sure of my facts as it's a few weeks since I spoke to them last. They confirmed that I am entitled to my holidays for this year, but added that I should also ask for last year's too. I was prepared for a battle on this year's holidays let alone last year's but I didn't even have to bring it up.


HR told me that I have somewhere between 34 and 37 days to take including last year's allowance (at least 10 more than I was aware of). Our holdays now run Jan-Jan and there isn't enough time left to take so many days off, so it has been suggested that as I'm starting a phased return I can take the hours that I'm not working as holiday. At the time, I didn't grasp what was being said but my partner who was in the meeting just looked at me and said 'this is a good idea, do it'.


It has finally clicked into place a couple of hours later that this means although I'll only start on 8 hours a week, I will get full pay. It even works out that after the entire phased return, I'll have days left. In addition to all this, where the OH doctor had suggested a 10 week phased return, HR think that this is too rapid and after starting work on the 22nd of this month I will be on full time hours in the second week of November.


I've had my own personal black cloud for weeks but now I feel like a weight has been lifted off my shoulders! I should get all this in writing by the end of next week. Oh smiles!!!

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